The participation of African Americans in clinical and public health research is essential. However, for a multitude of reasons, participation is low in many research studies. This article reviews the literature that substantiates barriers to participation and the legacy of past abuses of human subjects through research. The article then reports the results of seven focus groups with 60 African Americans in Los Angeles, Chicago, Washington, DC, and Atlanta during the winter of 1997. In order to improve recruitment and retention in research, the focus group study examined knowledge of and attitudes toward medical research, knowledge of the Tuskegee Syphilis Study, and reactions to the Home Box Office production, Miss Evers' Boys, a fictionalized version of the Tuskegee Study, that premiered in February, 1997. The study found that accurate knowledge about research was limited; lack of understanding and trust of informed consent procedures was problematic; and distrust of researchers posed a substantial barrier to recruitment. Additionally, the study found that, in general, participants believed that research was important, but they clearly distinguished between types of research they would be willing to consider participating in and their motivations for doing so.

Objectives We conducted the first empirical examination of disparities in H1N1 exposure, susceptibility to H1N1 complications, and access to health care during the H1N1 influenza pandemic. Methods We conducted a nationally representative survey among a sample drawn from more than 60000 US households. We analyzed responses from 1479 adults, including significant numbers of Blacks and Hispanics. The survey asked respondents about their ability to impose social distance in response to public health recommendations, their chronic health conditions, and their access to health care. Results Risk of exposure to H1N1 was significantly related to race and ethnicity. Spanish-speaking Hispanics were at greatest risk of exposure but were less susceptible to complications from H1N1. Disparities in access to health care remained significant for Spanish-speaking Hispanics after controlling for other demographic factors. We used measures based on prevalence of chronic conditions to determine that Blacks were the most susceptible to complications from H1N1. Conclusions We found significant race/ethnicity-related disparities in potential risk from H1N1 flu. Disparities in the risks of exposure, susceptibility (particularly to severe disease), and access to health care may interact to exacerbate existing health inequalities and contribute to increased morbidity and mortality in these populations.

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Vaccine confidence depends on trust in vaccines as products and trust in the system that produces them. In the US, this system consists of a complex network connecting pharmaceutical companies, government agencies, and the healthcare system. We explore narratives from White and African American adults describing their trust in these institutions, with a focus on influenza vaccine. Our data were collected between 2012 and 2014 as part of a mixed-methods investigation of racial disparities in influenza immunization. We interviewed 119 adults, primarily in Maryland and Washington, DC, in three stages utilizing semi-structured interviews (12), focus groups (9, n=91), and in-depth interviews (16). Analysis was guided by grounded theory. Trust in institutions emerged as a significant theme, with marked differences by race. In 2018, we contextualized these findings within the growing scholarship on trust and vaccines. Most participants distrusted pharmaceutical companies, which were viewed to be motivated by profit. Trust in government varied. Whites described implicit trust of federal institutions but questioned their competency. African Americans were less trusting of the government and were more likely to doubt its motives. Trust in institutions may be fragile, and once damaged, may take considerable time and effort to repair.